THE POWER OF FAITH, HOPE, AND LOVE
The Story of Rick and Josie Rose
By Tanya St. Clair
Imagine that you love to play the guitar. Suddenly your ring and pinky fingers will no longer press the strings. The paralysis gradually moves across your hand, up one arm, across the shoulders, and down the other arm. A few months later, your arms dangle limply by your side. You hold your cigarette with the hand that still works. Your arm won’t move to bring it to your lips, so you use your knee to catapult it into position. You grip the jug of milk in much the same manner and sling it onto the counter where you can tip it to pour a refreshing glass. A couple of years go by. You can no longer lift and pour the milk. You can no longer grip the Marlboro pleasure. You cannot bathe, dress, brush your teeth, roll over in bed, or even wipe after using the restroom. You are a like a child again, dependent on someone else for everything. Such is the life of Rick Rose, ALS survivor. If you’re thinking this is a heart-wrenching story of sorrow, it isn’t. Rick doesn’t have time for self-pity. He is too busy living, enjoying his retirement, and inspiring others.
According to The ALS Association, ALS (a.k.a. Lou Gherig’s Disease) strikes the nerves, causing atrophy of the muscles of about 15 new people each day. Ninety to ninety-five percent of all cases are of unknown cause, or sporadic. Only five to ten percent of cases are known as familial, caused by a mutated gene on chromosome 21. Another class is Guamarian, referring to a high incidence during the 1950’s in the Pacific around Guam and the Trust Territories. Initial symptoms are muscle weakness in the hands, arms, legs, speech, swallowing, or breathing. There can also be twitching or cramping. The Rose’s inform me, corroborated by The ALS Association, that the only way to diagnose ALS is to test for related diseases and rule out everything else. This process of elimination method is reminiscent of an episode of a popular TV doctor series.
Rick rolls down the hall in his power chair, controlled by a chin-maneuvered “joystick.” The love of his life, Josie, follows close behind. He meets me with a winning grin and asks where I want them. Before I can answer, he says, “Let’s go outside; I smoke. Is that alright?” I immediately concur and we make our way to the smoking mecca, the courtyard. He sets the tone with his signature quick-wit, “People say, you smoke? Like, what the hell am I going to die of—cancer?” We all laugh. Not that having cancer is a laughing matter. It isn’t. Rick has an uncanny ability to find humor in everything. He’s made a lot of proverbial lemonade. Josie sets the pack of Marlboro Light 100s and wind-resistant, button-touch butane lighter across the boards of the faded teakwood table in front of Rick. Without him asking, Josie instinctively slips a cigarette out, holds it up where Rick takes it between his lips, and lights it for him. Ahhh…he enjoys a long draw. Her gentle fingers take it down to flip the ashes in perfect synchronization, as if her appendage is his.
Rick’s humorous personality is further exemplified in a story he tells as he smokes his first cigarette. He and Josie were in a store. The ALS had affected Rick’s arms, but nothing more at that point. Some young ladies were perusing a table of books. One picked up a book and told her friend, “Look, Farewell to Arms.” Rick walked up to her and blurted out, “Are you making fun of me?” The flabbergasted girl stumbled all over herself apologizing. Josie walked over, laughing, and asked Rick what he was doing. That is typical Rick. He still gets a kick out of that one. If he can’t use his arms, he can definitely get a laugh out of them. He has the control of his attitude, his personality, and his sense of humor. ALS cannot rob him of that.
Rick’s journey began about nine years ago, when he began feeling numbness in his left pinky finger. Soon the numbness prevented him from playing the guitar. Still, he didn’t take it too seriously. It was not until Rick’s left hand sporadically let go of a light-weight shopping bag that he and wife Josie began their quest for an answer to the conundrum.
The following months brought one agonizing test after another—blood, EMG’s, NCV’s (nerve conduction velocity), spinal taps, and myelograms of the cervical spine. All were painful, but Rick recounts the NCVs as the worst. He explains that there are two kinds of NCV. There is the one that the technicians do. “They put leads in nerves and shoot electricity into it. When it doesn’t jump, they turn it up. The tech has a wand, sort-of like a tuning fork, and it goes BANG! The pain is excruciating! And if there’s any pain more than excruciating, it’s when the doc does the test,” says Rick. “In that one, the doc inserts a needle right into the muscle and shoots the electricity. That’s when I start hyperventilating.” Josie interjects, “I’ve got my hands on his shoulders. He’s ready to jump off the table and go after the doc.” Rick shakes his head and sighs. Josie grins as her eyes meet his. The only pains now are the occasional leg cramps. Josie dorsiflexes his feet and rubs them out.
In August of 2004, after three years of indeterminate diagnoses—IVIG (intermittent intergenoglobulin), CIDP (chronic inflammatory demyelating polyneurapathy), this or that syndrome, immunodeficient diseases, even Lyme disease, the doctors finally agreed. It was ALS. One might think that Josie, Rick, and the rest of the Rose family would have expected the news. On the contrary, doctors had previously told them it was definitely NOT ALS, which caused Rick to break down into tears of relief. The recantation came as a double blow. “How did you feel when you heard those words?” I ask. Rick stares at me, “Pretty Shitty.” I grimace, thinking, what a lame question to ask someone. He continues, “Scared to death, yet somewhat relieved.” Josie adds, “It was a relief because we finally knew what we’re dealing with.” Rick goes on to say that the business side of him kicked in and that’s when they set up the will, the power of attorney, and the durable power of attorney. A lump in my throat, I questioned whether he has a “do not resuscitate” order. As the muscles associated with breathing are affected, ALS patients eventually have to be ventilated. Rick says that it’s all about quality of life. In his own words, when Rick cannot breathe on his own “would be existing as a vegetable, that will be the time to go. I won’t be on a ventilator.”
In the past, when Rick saw people in wheelchairs, he felt empathy for them. What he didn’t realize until this happened is how many other people are affected besides the one in the wheelchair. Rick speaks of his ALS, “It’s a family disease. It affects everybody from the get-go.” He says that Josie has a child again, only this time the child is a full-grown adult. A typical day begins with Rick waking first. He can’t turn over on his own any longer, so he lies still until Josie wakes. “Josie hasn’t had a full night’s sleep in two years,” Rick says. Then she helps him up. Until recently, he could sit up in bed without help. He needs help with that, now. He can still walk short distances around the house. After he pees, she brushes his teeth, dresses him, and grooms him. He goes in and sits in the “Florida Room,” so named for the brightness of the light from windows which line three sides—a patio converted into a sun room. Two couches face each other. In the corner is the plant table. Lining one wall is the book shelf. Next to one of the couches are Rick’s chair and his table. He waits as Josie readies for her day. She comes in, perches on the end of the couch and enjoys her latest mystery, while Rick, sitting in his armed office chair, smokes several Marlboros. She holds her book and turns the pages one-handedly, while holding Rick’s Marlboro with the other. Each arm works on task autonomously, yet methodically, as if that is the way everyone does it. After a while they retire to the great room. Rick named it the great room because “it’s bigger than shit.” He takes his regular place on the couch. The spot has been built up with pillows so that Rick can stand from his seated position from there. He has become a fan of daytime TV. He loves the History channel and game shows. Jeopardy is his favorite. Although he can’t control the fingers on his left hand and those on his right hand are too weak to grip, he can still push the remote buttons. He can’t reach for the remote, so it must be placed under his hand. He enjoys the independence. Josie is an avid reader, so she reads when she isn’t doing laundry, cooking, cleaning, taking care of the bills, etc.
“Rick is the best husband and father anyone could ever ask for. I’d marry him all over again, even knowing this,” says Josie. She describes Rick’s helping with the children when they were young. He changed diapers, played with them, taught them, and often offered to watch them so she could take a break. He would tell her that she looked like she’d had a hard day with the kids and why didn’t she go visit her mom. He reminisces about going to the mall with their son, Bill, who was then about eight years old. This is another classic Rickism. Bill asked, “Dad, where are we going, now?” Rick told him, “You’re asking me? Follow your mother. Son, when you go to the mall, you just push the basket, carry the packages, and go wherever the woman wants, and don’t complain.” “OK, Dad.” How many men so patiently shop with their significant others? What a guy! Bill is now 27 and a hall director at UNT. When he takes the hall staff, or anyone, for that matter, shopping, he pushes the basket and tells them to lead the way. Josie voices that she understands how humiliating it is for this vibrant, active, loving man, this man who has always been the caregiver, to now be dependent. She looks longingly into his eyes and says, as if I’m not there, “No matter what, the alternative is not acceptable. I got plans for us. We’re retired. We’re going to take a trip to Michigan and to Germany.” Anyone can see that Josie doesn’t take care of Rick because she is obligated, because it is expected, or for any other reason than because it is her pleasure. Does she become overwhelmed at times? Of course she does. Are there times when she thinks she can’t handle another day? Yes. On those rare occasions, she sits down with Rick and cries it out. She draws from his inner strength. They are there for each other. They are fighting ALS together.
The couple finds their greatest help through the ALS support group. Information about resources, such as MDA (Muscular Dystrophy Association), SSA (Social Security Administration), and the VA (Veteran’ Administration) is shared. Those with the disease and the caregivers break into groups to share experiences and advise each other. Rick is the jokester. He keeps everyone laughing. The couple is an inspiration wherever they go. They show what a positive attitude can do. Of all the people in the group who had ALS when they first joined, Rick is the only survivor. He is still going strong.
The couple is also active in MDA fundraising events. Rick says he’s the adult poster boy for MDA. Pictured is Rick at Stride & Ride for MDA in January of 2008. The entire Rose family was asked to appear on television this past Labor Day to present a check to MDA from that event. Also pictured are Rick and Josie.
ALS is an expensive disease. Is there a cheap one? For some, it can be devastating. People can’t work. They lose their homes and cannot pay medical bills, especially the $1,500 per month prescription for Riluzole, the only FDA approved drug to treat ALS according to the Roses and The ALS Association. Rick and Josie are very fortunate financially. Rick used a computer and telephone to perform his job as a marketing manager for the Burlington Northern Santa Fe Railroad. When his employer learned of his illness, his office was immediately equipped with voice activated software. He went on short-term disability in January 2009, for which his employer paid him full salary. He retired the following August. Rick has a pension, RR Retirement, and his medicine is provided by the VA. The VA and MDA loan him all the medical equipment he needs. The VA paid for genetic testing. Fortunately for his children, Rick’s ALS is sporadic. The VA will also provide any other medical testing or service needed, if done at their facility. Rick and Josie already have a Hoyer lift to use if Rick becomes unable to move at all, in which case Josie will not be able to lift him. Rick and Josie have their house, their medical needs met, and no financial worries. They are the blessed ones.
What does the future hold for Rick and Josie? The ALS Association reports that the average life-span of a patient is three to five years. Many live ten years. Some can live twenty years and, in some rare cases, the ALS reverses. There is hope. Rick and Josie hold on to that hope. They are blessed to have the love and companionship of each other, to have four fabulous children who are close to them and to each other, to have no financial worries, and to have unwavering faith and hope. Rick wants to see all his children married and some grandchildren. Josie wants Rick to enjoy retirement with her. “I got plans,” repeats Josie. “I’m not ready to go anywhere,” declares Rick. “I got too much to live for. I have a wonderful life and a wonderful family. Am I afraid to die? No. Am I ready to die? Not yet.”